BEFORE READING the following post, please take note of the following information. It is now August 8, 2011 and I originally wrote this post 13 months ago on July 8, 2010. I am still alive now and I feel great! The first paragraph of the original post contains a lot of statistics that I cannot backup with any direct citations. They are just bits and pieces of information I have picked up in talking to staff and other patients at Emory about their own experiences, and from the very limited information available online regarding VTEPA chemotherapy.
Have you ever wondered what VTEPA chemotherapy would be like? No, probably not. Here are a few interesting facts about this regimen. It was developed by the Bone Marrow Transplant team of physicians, oncologists, hematologists and super brains at Emory University and Winship Cancer Institute. In one of its first trials, it was so strong that it killed two of the 16 people it was used on. Out of the 300+ bone marrow transplant patients that Emory facilitates each year, this drug regimen is still only used about once per month. And they tell me that approximately half of the patients who receive it, have to be re-admitted to the hospital within a few days after discharge because of the intense side effects. Now, considering all that, I think I am doing pretty well. For starters, I am writing this, so it has not killed me. And I am at home three days after discharge, and while I still feel mere moments from throwing up at any time, I have not needed to get re-admitted.
Don’t get me wrong though, this was serious chemo. This was payback for something I did in another life that was very very bad. I don’t know what it was, but I certainly hope the score is settled now. I started feeling bad when I woke up Sunday morning. As of Saturday, I was still leaving my hospital room and going for walks outside and trying to be productive with my time. Sunday, I got up, brushed my teeth, and went back to bed. And I stayed there, nearly all day. Monday was more of the same. I even told Angela not to come visit and to pass the message to my parents. I did not want to see anybody or talk to anybody or do anything. Tuesday was much of the same although I was finally at home. Wednesday I got to spend a little bit of time pretending to be a normal person, but it was only pretending. I spent a few hours in my new recliner Wednesday afternoon. By the way, thank you to everyone who contributed to make that happen. My mom has worked really hard pulling it all together and I am really looking forward to using it. I could not get totally comfortable in it yesterday because of my stomach. Lying flat out in bed is the only place that I can really count on for comfort right now. I suppose it is telling of the whole situation that if a big soft cushy recliner can’t make me comfortable, I must be in a bad way. There is a big basket of cards right next to it along with some other gifts that I have not delved into yet. I am waiting until I am a bit more conscious of what is going on. Now would have been a good time, but nobody else is here.
The frustrating part is that the symptoms and side effects come in waves and are not predictable. One moment, I will think I am starting to feel okay, so I climb out of bed, and then within 4 or 5 steps I am clutching at the wall because I am so dizzy. And I know I am supposed to consume some protein to help with the fatigue and I am really trying to eat, but everything makes me want to throw up. Last night, I threw up while trying to put a pill in my mouth. It had not even crossed my lips yet, but my body knew that combination of 1.) Open the mouth, 2.) Pick something up with the left hand, 3.) Raise said thing toward the open mouth. And my whole body reacted. My throat closed up, I gagged, and ran off to the bathroom where I lost what little chicken soup I had managed to get down an hour before. Not fair. How am I supposed to build any strength back with my body not cooperating. It knows it is full of hideous toxins and it wants them out. That is obviously job number one right now. It’s like a really bad hangover that lasts for days, and days, and days. But it is amazing that the body is smart enough to know that it has to get rid of these nasty platinum and metal based toxins and chemicals before it can focus on getting nourishment from real food and real stimuli. So, I will just keep helping it along by flushing with water and gatorade…and sleeping.
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Karen says:
July 9, 2010 at 8:19 am (UTC -5)
Uncle Ray thought about this long and hard and is pretty convinced you are settling the score for generations of Gennari’s!!!!! YIKES! Look at it this way…your covering for Dominic…he is now free from paying for any of the original sins of the Gennari’s passed. Certainly this information only makes the situation easier to understand – not easier to handle. They did pass along their resilience and ability to climb through the brambles of life. I mean, honestly, look at your Uncle Ray! OK…not a great example. With that said, I think about you every minute of every day and can’t wait until this wild trip is behind you. Hugs and Kisses
Lynn says:
July 9, 2010 at 10:32 pm (UTC -5)
Hey Dan, Lynn from Planet Cancer here. Was thinking of you wondering how that extra special chemo was going. Glad to know you could muster up some energy to update your blog. that’s something. i remember times when just looking at something would trigger me to puke. your body is surely doing what it needs to do. good or bad.. only days will help. as they pass, so too will the toxins… keep hanging in there.